Temporal Lobe Epilepsy? Nocturnal Seizure?

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tom21

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Sorry if I'm posting this in the wrong section. I'm not exactly "new", I registered 2 and a half years ago about but I only made 1 post so I thought it would be okay to post in this section anyways. As the title indicates, I'm wondering about the possibility that maybe I'm having nocturnal seizures and that temporal lobe epilepsy is causing them. About 3 years ago I had an EEG that said I had left temporal lobe activity and I got two different opinions from different neurologists. One said it was normal for my age and the other noted short sharp spikes of activity or something like that but said I didnt have epilepsy. I was never diagnosed and tried to go on with my life but lately I've been running into problems again. I got my first eeg in 3 years on June 19th and the results from that, much to my surprise, turned up normal. It's surprising because I actually feel worse than I did when I got my first eeg 3 years ago. Even though the results were normal I'm not convinced, which is why I also had my first MRI in 3 years like the EEG this last monday and am waiting for the results. Along with worsening symptoms I've also had a few strange occurences lately which is what I'm mainly inquiring about here. There's two in particular that especially were alarming. About a month or two ago I was sleeping one night and woke up and was panicking immediately. I couldn't stop and felt like I couldn't remember anything. At the time the only way I remember how I described it was that "things werent adding up in my head". It felt like I was extremely disconnected from reality and couldnt come back. That eventually subsided but then the next strange occurence is even more concerning. On the very night of the EEG, I went to sleep in the living room on the floor. I again, woke up to panicking but this time when I awoke and looked around I also noticed immediately that everything I looked at looked huge. It was terrifying. It was like everything was close to me and giant in size. That also stopped shortly afterwards but it's very concerning. (I also need to note that before waking up to panic and having the strange hallucination or whatever it was, according to my mom who was also there I made a "vibrating" or groaning sound in my sleep before waking up). Along with those strange incidents I've been feeling worse cognitively, like worsening short term memory. Also have worsening depersonalization/derealization symptoms (this is why I originally got neurological testing done 3 years ago), feeling dizzy, nauseous, blurry vision, hypersalivation, unexplained random panic attacks, confusion, just a general feeling that something is very wrong, even at times feeling like its hard to walk or think, and all kinds of other stuff. There's even more symptoms and feelings I could type but I dont want this to get too long. I hope someone could please tell me if any of this sounds like I might be having nocturnal seizures or could have TLE. -thanks
 
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Hi Tom,

Sorry you had to come back to CWE with more seizure-like symptoms. What you describe, IMO does sound like nocturnal seizure(s) with those "vibrating" and groaning sounds while you were sleeping. And since things look unusually large when you awoke, that sounds like the "Alice in Wonderland" syndrome, a very common symptom of Temporal Lobe Epilepsy.

I have TLE and sometimes I have experienced nocturnal seizures, too, so it can/does happen. I hope you are seeing an epileptologist.
 
Hi Tom,

Sorry you had to come back to CWE with more seizure-like symptoms. What you describe, IMO does sound like nocturnal seizure(s) with those "vibrating" and groaning sounds while you were sleeping. And since things look unusually large when you awoke, that sounds like the "Alice in Wonderland" syndrome, a very common symptom of Temporal Lobe Epilepsy.

I have TLE and sometimes I have experienced nocturnal seizures, too, so it can/does happen. I hope you are seeing an epileptologist.
Thanks for replying Cint, much appreciated.

If that's the case then why did my second EEG come back normal? This is all very confusing. As I said, I'm now awaiting MRI results but if those come back normal I don't think I'll know what to do anymore. Me and my doctor made an agreement that if my MRI comes back normal like the EEG did then I have to refer back to psychiatry again. I feel that if I try to go back to my regular doctor or neurologist, they won't believe me or will just think its a psychiatric issue. Should I ask for another EEG regardless? And I'm not sure what an epileptologist is...
 
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An epileptologist is a neurologist who has specialized training in epilepsy. Many neurologists don't know much about epilepsy, which is a very complex condition.

How long was your most recent EEG? Many people with seizures and epilepsy have normal EEGs. An EEG will only show seizure activity if you are having a seizure during the EEG - and if it is a short EEG, and your seizures are infrequent that is very unlikely. There are EEG results that are consistent with epilepsy (in particular, "spikes" and "slow waves" which it sounds like might have shown up on your initial EEG), but the absence of those findings does not rule out epilepsy. A positive EEG can confirm a diagnosis of seizures and epilepsy, but a negative one does not rule it out.

In addition, many people with epilepsy also have a normal MRI. I would not automatically assume that your symptoms are psychiatric simply on the basis of that.

If these episodes continue, it may be necessary to schedule a longer inpatient EEG to try to capture what is going on. Some symptoms of temporal lobe epilepsy can be mistaken for psychiatric conditions, particularly anxiety and panic. My daughter's simple partial seizures were initially diagnosed as anxiety (particularly since they do not show up on an EEG even when she is having them - they are too deep in the brain) - it wasn't until she had one that progressed to a full tonic-clonic seizure that her doctors were clear that they were also seizure activity.

Finally, if your mother or someone can get a video of you during one of these episodes that can be very helpful. I know how difficult that is, but it is worth seeing if you can do that.

Good luck on getting this sorted out!
 
An epileptologist is a neurologist who has specialized training in epilepsy. Many neurologists don't know much about epilepsy, which is a very complex condition.

How long was your most recent EEG? Many people with seizures and epilepsy have normal EEGs. An EEG will only show seizure activity if you are having a seizure during the EEG - and if it is a short EEG, and your seizures are infrequent that is very unlikely. There are EEG results that are consistent with epilepsy (in particular, "spikes" and "slow waves" which it sounds like might have shown up on your initial EEG), but the absence of those findings does not rule out epilepsy. A positive EEG can confirm a diagnosis of seizures and epilepsy, but a negative one does not rule it out.

In addition, many people with epilepsy also have a normal MRI. I would not automatically assume that your symptoms are psychiatric simply on the basis of that.

If these episodes continue, it may be necessary to schedule a longer inpatient EEG to try to capture what is going on. Some symptoms of temporal lobe epilepsy can be mistaken for psychiatric conditions, particularly anxiety and panic. My daughter's simple partial seizures were initially diagnosed as anxiety (particularly since they do not show up on an EEG even when she is having them - they are too deep in the brain) - it wasn't until she had one that progressed to a full tonic-clonic seizure that her doctors were clear that they were also seizure activity.

Finally, if your mother or someone can get a video of you during one of these episodes that can be very helpful. I know how difficult that is, but it is worth seeing if you can do that.

Good luck on getting this sorted out!
Hm, I didn't know this. Thank you for that information. I might try and see one if they allow me too. As for your question, my EEG was only about 20-30 min long and I remember being concerned that day and even after it that it would in fact show up with normal results because I had not been sleep deprived for the EEG like I was supposed to be. I messed up the night before it and went to sleep too early and then slept in too long. So maybe I should get another one?
 
Hm, I didn't know this. Thank you for that information. I might try and see one if they allow me too. As for your question, my EEG was only about 20-30 min long and I remember being concerned that day and even after it that it would in fact show up with normal results because I had not been sleep deprived for the EEG like I was supposed to be. I messed up the night before it and went to sleep too early and then slept in too long. So maybe I should get another one?

If you were supposed to have a sleep-deprived EEG and you were not in fact sleep deprived, yes that would definitely be a reason to have another one! But even if that was normal it would not necessarily mean that you aren't having seizures. Sleep deprivation makes it more likely that epileptic activity will show up, but it does not guarantee it.

Are you seeing a neurologist now, or are you discussing these things with your primary care doctor? A good neurologist will know that an EEG does not rule out epilepsy.
 
If you were supposed to have a sleep-deprived EEG and you were not in fact sleep deprived, yes that would definitely be a reason to have another one! But even if that was normal it would not necessarily mean that you aren't having seizures. Sleep deprivation makes it more likely that epileptic activity will show up, but it does not guarantee it.

Are you seeing a neurologist now, or are you discussing these things with your primary care doctor? A good neurologist will know that an EEG does not rule out epilepsy.
I haven't seen my neurologist in a long time but I've been in contact (by phone to schedule EEG) with him recently. Mainly this has just been going on between me and my normal doctor with my doctor and neurologist relaying messages back and forth with each other like usual. The last time I saw my neurologist was back probably around the time that my EEG showed left temporal lobe activity 3 years ago. Since this recent EEG turned up normal I don't think I'd have reason enough to see him now though...according to my doctor that is since he would be the one to refer me. I will try however to discuss my MRI results with my neurologist as a way to talk to him about all of this. Maybe that will work, who knows. I really am at a loss as to what to do next. It's all very confusing
 
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An EEG will only show seizure activity if you are having a seizure during the EEG.
This is more or less right, but an EEG can also register abnormal "interictal ("between seizure") brainwaves characteristic of epilepsy when you are NOT having a seizure. I've never had a seizure during an EEG, but my EEGs have shown a "classic" epilepsy pattern called spike and dome, which confirmed my diagnosis.

With TLE though, it is much more common for the EEG to come up normal. Still, a trained neurologist should be able to make a diagnosis based on your clinical symptoms alone, (especially given that you had a potentially abnormal EEG in the past). A positive EEG can confirm an epilepsy diagnosis, but a negative one cannot rule it out.
 
Hi, tom21
I also have nocturnal seizures, but different from what you describe.
Some of the symptoms you describe (hallucinations, alterations in the perception of size of things) can be seen with parietal lobe seizures as well.
As for EEGs, what others here have said about them being normal even in cases of epilepsy is true with me also. I even had an inpatient video EEG in which the EEG was normal even when I had seizure activity in my sleep, so based on the video of the seizures and symptoms that I have described about what happens at home, the diagnosis was made.
 
Hi, tom21
so based on the video of the seizures and symptoms that I have described about what happens at home, the diagnosis was made.
Hi masterjen, thanks for replying. Would it be alright with you if you could describe some of these symptoms? I'd like to see if I can relate at all.

This is all very confusing because there's times when I can relate with what people say about epilepsy and seizures and people can relate to me, but there's also alot of doubt at the same time though unfortunately... Alot of things I cannot relate to and I keep changing my mind and flip flopping about what it is that I might have. There's some background information that I left out of my first post in this thread that I should probably let you guys know. The whole reason I got neurological testing done 3 years ago in the first place was because of what seemed to be the after effects/aftermath of a bad drug trip. That was in late 2011. I woke up one day feeling seriously wrong and messed up and had testing done but no neurological diagnosis was given nor really a firm mental one either. Since then I'd just been monitoring my symptoms and it would go up and down and I'd research and never came to any firm conclusions. Time went by and unfortunately, I was in a car accident in 2013 that seemed to make things alot worse. After that I basically just did what I had done before, closely monitored things. As time went by I couldnt really tell anymore whether my symptoms had gotten worse and I just tried to ignore it. Fast forward to 2015 and that seems pretty hard to do now. Something really does seem terribly wrong and I'm struggling to find answers. It seems right around the time that I had those strange occurences/experiences things just blew up and I was bombarded with heavier and more frequent symptoms and I don't know whether it's neurological or mental. The only other thing I can think of besides having epilepsy is maybe the possibility of psychosis or brain damage. I'm just trying to relate to people on here as much as possible hoping that maybe it's epilepsy or something similar, so it'd be nice to hear the symptoms and any strange experiences you have.

These are my most alarming and concerning symptoms: feeling VERY out of touch with reality, dissociation, strange vision (hard to explain), feeling as though its hard for me to eat and swallow food (sometimes), feeling like it's hard to walk and talk(sometimes), feeling like it's hard to think and do everyday simple tasks, worsening short term memory and feeling as though my cognitive functioning in general is declining etc.

If any of these sound typical of someone who has TLE please let me know.

-thanks
 
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Not all the same things happen to everyone who has epilepsy. So just because it happens to you and not to someone else is normal.

These are my most alarming and concerning symptoms: feeling VERY out of touch with reality, dissociation, strange vision (hard to explain), feeling as though its hard for me to eat and swallow food (sometimes), feeling like it's hard to walk and talk(sometimes), feeling like it's hard to think and do everyday simple tasks, worsening short term memory and feeling as though my cognitive functioning in general is declining etc.

If any of these sound typical of someone who has TLE please let me know.

-thanks

I'm guessing that these things happen when you are awake?

During some of my simple partial seizures, the type when you don't black out, I do have some of these things happen to mean and they are hard to explain.

I'll see things at times during a simple partial. Sometimes things just don't seem right. Once when I was in the living room all the furniture looked like it was in the wrong place. I might be talking but what I think I'm saying isn't what's coming out of my mouth. I've also had trouble concentrating at times.

I have both simple and complex partial seizures, the type where you black out. I also have grand mals sometimes. After many of my seizures I've lost a good bit of memory of things that happened before hand, things that had gone on that day or a few days before. I also have very bad short term and long term memory problems too in general.

If you are having problems with your dr then you might want to consider looking for a new one.
 
Hi masterjen, thanks for replying. Would it be alright with you if you could describe some of these symptoms? I'd like to see if I can relate at all.

I have tonic, myoclonic and partial seizures, all of which are 99% nocturnal. I have never been woken by anything except the seizure itself; no mental or physical sensations wake me immediately before the seizure. And when I do wake up it is so vaguely awake and briefly - the seizure has started by the time I wake, I am awake for a couple of seconds, and I am not aware of it stopping before I am "out" again. Partial seizures are primarily motor for me also; no mental issues (deja vu, that kind of thing).
 
Not all the same things happen to everyone who has epilepsy. So just because it happens to you and not to someone else is normal.



I'm guessing that these things happen when you are awake?

During some of my simple partial seizures, the type when you don't black out, I do have some of these things happen to mean and they are hard to explain.

I'll see things at times during a simple partial. Sometimes things just don't seem right. Once when I was in the living room all the furniture looked like it was in the wrong place. I might be talking but what I think I'm saying isn't what's coming out of my mouth. I've also had trouble concentrating at times.

I have both simple and complex partial seizures, the type where you black out. I also have grand mals sometimes. After many of my seizures I've lost a good bit of memory of things that happened before hand, things that had gone on that day or a few days before. I also have very bad short term and long term memory problems too in general.

If you are having problems with your dr then you might want to consider looking for a new one.
Yes, most if not all are while I'm awake during the day and are just mostly ongoing symptoms that happen continuously throughout the day. It's not really episodic which sometimes makes me think that maybe this is a psychiatric thing rather than neurological. But then it's the strange occurrences/experiences I get sometimes, most of which happen during or around when I'm sleeping, that shift my focus back on the neurological side of things. These strange occurrences make me wonder if maybe something is going on in my sleep which then makes me feel all of these crazy symptoms during the day or that maybe I'm having really tiny seizures during the day. I really don't know..
 
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Hey Tom,
I don't know which type of seizures I have as they've been called all sorts of things in the 49 years I've had E, so I just stopped asking what they're classified as. But, temporal lobe is one they've been called. I black out, wave my arms, and am "out of it" for a few minutes and/or fall asleep. My auras do sometimes involve vision changes - colors change, shapes change, had answers pop up on my suduko puzzle (very strange, but it's true), and I sort of go into a bit of a pre-recorded scenario in my head where I'm soothing everyone who's worried about me having a seizure.

At any rate, in all the EEGs I've had during my life, the vast majority came up "normal". During these times, being frustrated and asking a doc about it, they said that 10% of people with E will show up "normal" on an EEG and 10% of "normal" people will show E activity on an EEG. Now, this was at least 15 years ago that I was told this, and I don't know if the technology has been improved or if this is still true. But, I wouldn't let the results of the EEG bother me. It's just a tool they use to try to figure out what's going on.

Sounds like for you, it would be a great idea now to journal what's happening, what you're feeling and when. Also add what you're eating, doing, how much sleep you get, etc.

I just had a video-taped eeg where I went in late morning on a Monday and stayed until afternoon Friday. They did the sleep deprivation overnight, and they were going to do the flashing lights and hyperventilating tests, but I had enough seizures before then, so it was unnecessary. During this I was also hooked to an EKG and they watched my blood-oxygen level, took my blood pressure and temperature constantly (or so it seemed, lol). They saw that just before my seizure, my heart rate goes up a bit. Of course, I have a slow natural heart rate and low blood pressure, so it's not hard to make it go up. But this was happening when I was sitting on my arse all day long.

Another interesting thing was when they kept referring to a seizure I had during dinner one day. I had been eating alone, no visitors or nurses in the room. I had no idea that I'd had a seizure because I didn't spill food, and since no one was there and the tv wasn't on, I didn't notice the missing time frames. So, it's quite possible you could have small seizures without being aware that they happen.
 
Hey Tom,
I don't know which type of seizures I have as they've been called all sorts of things in the 49 years I've had E, so I just stopped asking what they're classified as. But, temporal lobe is one they've been called. I black out, wave my arms, and am "out of it" for a few minutes and/or fall asleep. My auras do sometimes involve vision changes - colors change, shapes change, had answers pop up on my suduko puzzle (very strange, but it's true), and I sort of go into a bit of a pre-recorded scenario in my head where I'm soothing everyone who's worried about me having a seizure.

At any rate, in all the EEGs I've had during my life, the vast majority came up "normal". During these times, being frustrated and asking a doc about it, they said that 10% of people with E will show up "normal" on an EEG and 10% of "normal" people will show E activity on an EEG. Now, this was at least 15 years ago that I was told this, and I don't know if the technology has been improved or if this is still true. But, I wouldn't let the results of the EEG bother me. It's just a tool they use to try to figure out what's going on.

Sounds like for you, it would be a great idea now to journal what's happening, what you're feeling and when. Also add what you're eating, doing, how much sleep you get, etc.

I just had a video-taped eeg where I went in late morning on a Monday and stayed until afternoon Friday. They did the sleep deprivation overnight, and they were going to do the flashing lights and hyperventilating tests, but I had enough seizures before then, so it was unnecessary. During this I was also hooked to an EKG and they watched my blood-oxygen level, took my blood pressure and temperature constantly (or so it seemed, lol). They saw that just before my seizure, my heart rate goes up a bit. Of course, I have a slow natural heart rate and low blood pressure, so it's not hard to make it go up. But this was happening when I was sitting on my arse all day long.

Another interesting thing was when they kept referring to a seizure I had during dinner one day. I had been eating alone, no visitors or nurses in the room. I had no idea that I'd had a seizure because I didn't spill food, and since no one was there and the tv wasn't on, I didn't notice the missing time frames. So, it's quite possible you could have small seizures without being aware that they happen.
Thanks pink, I will definitely keep all of what you said here in mind. I can't relate to too much here but what you said near the end about the time loss sort of thing, I might've experienced in small increments before. Also, there's something I forgot to add before into one of my posts that I feel would be appropriate to add now being that you said you have TLE or might have it. When I had that strange occurence where I woke up into a panic and everything looked huge, I also noticed a change in mental status after it. It felt like reality was harder to grasp than usual for me (i have constant depersonalization/derealization during the day) and it felt like I "forgot" alot of things about reality and had to "relearn things" or that reality was new to me. Been feeling that way ever since around that time period and I heard before that any symptoms you had before can increase alot in the weeks following a seizure so this has me wondering. My symptoms seemed to explode and get much worse around and after those strange episodes. Anyways, If anyone can relate to this please let me know. thank you :)
 
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Hi Tom,
I've had nocturnal epilepsy for 31 years with multiple eegs all of which have shown nothing but normal.

I'm trying to arrange for a sleep study (HMO paperwork bs.)

As Nak said, a positive eeg confirms the diagnosis but a negative one (or several) doesn't rule it out.

Another thing I'm looking into is the connection between sleep apnea and nocturnal seizures.
 
Hi Tom,
I've had nocturnal epilepsy for 31 years with multiple eegs all of which have shown nothing but normal.

I'm trying to arrange for a sleep study (HMO paperwork bs.)

As Nak said, a positive eeg confirms the diagnosis but a negative one (or several) doesn't rule it out.

Another thing I'm looking into is the connection between sleep apnea and nocturnal seizures.
Hey Aloha, wow that's interesting. Maybe I really should push for another one soon then or get more different kinds of neurological testing done, perhaps a different kind of EEG or something. And could you relate to any of the things I said in previous posts here in the thread? Have you had anything similar?
 
I can definitely relate to the waking up in a blind gasping panic state.
Do you ever feel like you can't breathe as you are going into a seizure? The theory is that sleep apnea causes oxygen deprivation which then causes the sleep seizures.

This is a thread I started a little while back.
http://www.coping-with-epilepsy.com/forums/f23/anyone-nocturnal-seizures-25194/

Take a look at the link in the OP. Best information I have ever found specifically about nocturnal epilepsy and other "parasomnia" events.
 
I can definitely relate to the waking up in a blind gasping panic state.
Do you ever feel like you can't breathe as you are going into a seizure? The theory is that sleep apnea causes oxygen deprivation which then causes the sleep seizures.

This is a thread I started a little while back.


Take a look at the link in the OP. Best information I have ever found specifically about nocturnal epilepsy and other "parasomnia" events.
Ok, well that's good news I suppose. Any relation even small is good. And no I don't ever feel like I can't breathe, not one of the symptoms/feelings I've experienced thus far. Thanks for the link by the way, I'll read some now :)
 
Aloha, that's interesting about the can't breathe. When they did my video eeg, the heart monitors were just above and behind the bed. Thus, whenever I held my breath (which I didn't realize I did so often), the monitor would start beeping. I've never felt I can't breathe, but I have a low heart rate and bp, so if I do hold my breath it has the same effect.
Interesting interesting interesting :)
 
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